Friday, May 13, 2011

The Immoral Life of Henrietta Lacks by Rebecca Skloot

Wow wow wow.Some books make me really thankful to be a reader.This book tells the story of one aspect of medical testing, the benefits gained, and the impact to a family who is an unwilling participant.The author does a fantastic job of weaving the story of the family into the more clinical side of medical research.

Henrietta Lacks was a mother, a wife and an adored part of her community and in 1951 she died of a horribly aggressive strain of cervical cancer.Mrs. Lacks tumors were biopsied and retained by Johns Hopkins University and they turned into one of the most prolific forms of human cells ever cultivated in our medical research community.Because of the cells there were many advancements in cancer research, the most notable being the discovery of the HPV virus and its subsequent vaccine.This advancement alone is expected to dramatically reduce cervical cancer in future generations of women.

Mrs. Lacks cells – known in the medical community as HeLa were cultivated and shipped around the world for testing in all manner of experiments.HeLa cells were even sent into space as part of experiments.

Divide and Conquer A HeLa cell splitting into two new cells.
The green spots are chromosomes.Courtesy Paul D. Andrews

While the doctor who initially treated Mrs. Lacks and took her cells discovered the amazing properties of the HeLa cells didn’t personally profit from them,at least one multi-million dollar biotech company resulted because of the profitability of selling the cells to researchers around the globe.

The problem – neither Mrs. Lacks nor her family were asked if the cells could be obtained or used.Her family were shocked to find out years later that their mother was “still alive”.Furthermore the idea that people and companies were profiting from their mother while they couldn’t afford to see a doctor was extremely challenging.

This book adeptly explores the topic of medical ethics.From medical testing that occurred on poor and uneducated populations (the Tuskegee Experiments) to the fact that even in modern times when blood or tissues are sampled for needed testing the remainder of the samples that are unused after the tests are run are cataloged and used for research, Ms. Skloot does a remarkable job of bringing the facts to light in an accessible way.She balances the benefits of the medical advancements that have been made with the emotional impact to this family.

The Lack’s don’t have the medical background to understand that while the cells that were taken from their mother are still growing that she in fact is dead.At one heartbreaking point in the book, her daughter who was 5 or 6 when her mom died asks if it would be possible to use the cells in a cloning process so she could have her mother back. She is frantic at the idea that researchers are injecting her mother(s cells) with the AIDS virus, with other cancers and other diseases like polio.She wonders if these tests are causing her mother pain.Furthermore, in the 80’s little was known about the AIDS virus and the social stigma was also painful for this deeply religious family.

We felt that there were heroes in this true story.Dr. Gey, the doctor who treated Mrs. Lacks and obtained the cells was a hero.The idea of informed consent is a modern one and Dr. Gey didn’t operate with those rules.He could have personally profited from his “discovery” but instead shared his findings (the cells) with the medical research community because it was best for mankind.

The author herself is a hero.She advocates for the family, educates the family and supports their emotional journey and gives them what they likely need most – acknowledgement.

There was a hero at the mental institution where the Lack’s youngest sister lived and died who stepped up to not hide a horrific truth.The facts of this little girls life and terrible death were hard to hear, but the relief felt by the family far overshadowed the somewhat reasonable desire by the institution to downplay or cover-up the truth of how life in institutions were at that time.

Along with the heroes there are some very heartbreaking aspects to this story.The children of Mrs. Lacks suffered greatly after her death.Not only were they at a disadvantage because they lost their mother at such as young age, but they were subjected to an almost cartoonish horrible step mother.The youngest child was in an institution prior to her mother’s death, tragically misdiagnosed as an “idiot” when medically the likely only real issue was deafness.Additionally, once Mrs. Lacks, who visited with her daughter weekly, died no one ever visited the child again.Her siblings were horrified to learn much later that they had a sister and that she had died without ever knowing why her mother never came back to see her.

The other tragic figure in the book is one of Mrs. Lack’s sons.He suffered greatly at the hands of the step-mother and he turned into an angry, selfish man-child with no skills, no hope and no real happiness.

We felt the story was well told, it was accessible, touching and extremely relevant to our world. Ms. Skloot was hailed by the New York Times Book review as having told the Lacks family often painful history with grace.I personally agree.